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It's all trial and error, isn't it?

support

My life has recently been put into a list. Broken down into a series of trivial activities which are apparently all that I am. They are assigned a figure signifying how much of each item I am entitled to do.

I didn’t ask for the list. It was given to me and maybe I should just be grateful and move on.

I asked for some help, and if you know me personally, you will know this alone is difficult enough for someone as stubborn as I. But I asked for help from the local care trust, to provide support to allow me to be as independent as I can. To not have to rely on my family and my partner to do things for me when they have their own lives to live day-to-day. My partner needs to have a full time job in order for us to afford our own home, and to raise our kids in the way we want, with the income we have. Ideally he wouldn’t have to work, and he’d be around to help me to the things I can’t do. He regularly does these things throughout the week, but he can’t work and help me at the same time. He is only one man! He needs his own independence too, I can be quite annoying.

Of course, ideally we’d be bazillionaires, own a massive house with everything we want and need and not need to work, and enjoy doing jobs and making things better for others. We’d have a pool outside with sun loungers and a cinema in the basement with huge reclining chairs. We’d have an enormous shiny kitchen with an island in the middle and a giant oven and hob with 12 gas burners. We’d go and visit other countries and take our girls to see the world. Don’t say that’s not your dream as well because we both know it is. Nobody wants to earn just enough to get by, to co-own your house with a bank, knowing you’ll be paying back so much more than your house is worth. Groaning at the price of diesel at the fuel pumps, dreading the letters from BT to say they’ve increased line-rental prices by £2.30 more per month, to have to receive help from the state to pay for someone to take you for a wee at work. You know, the things everyone worries about. But sometimes things are necessary and for certain things we need to ask for help.

Luckily there is a welfare state in the country I live in and for that I know I am grateful. What other people in less developed countries are lacking due to their country’s wealth or their government is sad. And I am grateful for what we have.

I will always be grateful for what I am given and it is important for me that whoever is reading this understands that. But right now I am struggling to respect the behaviour and attitudes of those in the power to give. I am sorry that I want to scream in the faces of those people who are in a position to give me the means to the support I need, scream at them that they don’t get it. They just don’t get it.

I am a mum. A disabled mum. A disabled mum whose two girls live with her at home because that is where they should be. So when the person who ticks the boxes on the oh-so-important paperwork suggests an amount in the proposed budget, assigned for ‘childcare’, please, tell me how I am supposed to feel. Because for over FOUR years, we have been explaining to those in the adult social care section of the local care trust that WE ARE NOT ASKING TO USE A PA FOR CHILDCARE. They argued with us before and after Amélie was born in 2011, with us explaining the help and support is for ME. If MY needs are taken care of, from personal care, to helping me do the weekly food shop, and helping me carry out my role as a mum, (FYI, this falls under Adult Support services) then there are no concerns about my children. They tried to suggest that Children’s Services needed to be involved. We disagreed, as did the Health Visitor and my Occupational Therapist. Why should we be subject to being analysed by the same people who investigate abuse or lack of parenting skills, when there’s never been a concern about my kid’s welfare? Because, they were trying to get out of providing help for a disabled parent by claiming my child was ‘at risk’ if I couldn’t look after them by myself. If they ignored part of the ‘problem’ that was my needs, maybe it would go away. Passed on to someone else with a slightly different form of paperwork. That was a fun time. It’s always nice being told you’re a risk to your own baby.

We pay a lot of money for our children to go to nursery when we work, that’s childcare. When I look after my children, that’s simply me being a parent. At what point have I ever asked for them to pay for someone to come in and care for my children while I sit there and have a mani-pedi?

Anyway, back to the recent reassessment. Do you know how many hours were suggested I could or might use for ‘childcare’ (it’s not for CHILDCARE) out of the weekly amount?

Three.

Three hours is what this lady assigned for my role as a parent. As a mum. Three hours in a week. Of course this doesn’t mean I can only get my PA to do three hours a week of helping me take care of my own kids. It’s a figure that this person so kindly broke down theoretically into areas of the help I need, in case I can’t work that out for myself. I ask my PA to work at certain times (usually just weekdays while my partner works full time) that I know I need help and a large part of that is to help me carry out the physical aspects of my role as a mum. Of course she does more than three hours of that. Which young children only need things doing for them for three hours a week? I guess I could only feed them breakfast on certain days, dinner on different days, send them out in their PJs a few times a week, that would save time.

Two hours a week she guessed as what I might use for ‘socialisation’. Bloody hell. What am I? A puppy? A prisoner being allowed outside with the other delinquents for a couple of hours each week, to get some fresh air in my lungs? What crime did I commit?

I promise I am not, and have never asked for anything I don’t think I need. I understand completely that this country is a little tits-up when it comes to budgeting and controlling its spending. But I am not asking for more than I need. So why does my life have to be broken down into time and money every year in such an intensive yet careless manner? I am fully aware of the burden I place on the state. I see how much I cost them. Written down on paper just to rub it in. You know that shitty feeling you get in your belly when you know something bad is going to happen, like when you go into a chemistry exam knowing you did precisely 7 minutes of revision for? That feeling stays with me. It comes back to rear its ugly head quite often but it never properly goes away.

So my last response via email a few days ago was reiterating yet again about the need to cover the physical help I need as a disabled mum, and I have yet to hear back about a more final figure they’ll allow me. Final. Ha. Of course I don’t mean final you silly goose! Until they decide to do this all over again. And again. And again. There’s no continuity of care, we can’t get it sorted and get on with our lives feeling assured. My condition isn’t going to improve, It only gets worse, so it’s like we have a general election in our lives every year, where our way of life may change in a heartbeat down to the opinion of whomever happens to get our case that year.

In a particularly sad and depressing end to such a positive blog post, all of this makes me sometimes feel guilty for having my own children. For being a costly member of society because I selfishly wanted to reproduce knowing fully that there would be many things I’d need someone else to do for me.

Of course, I don’t regret my children for a second. They’re a little annoying at times, waking us up in the night, puking on my face, and demanding to be fed several times a week, so selfish. But between the two of us we somehow managed to spawn some pretty cute and hilarious small people. I guess they can stay.